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Why Am I Not Sick From Eating Gluten?!?!?!


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#1 saaa-wheat<3

 
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Posted 15 January 2013 - 10:14 AM

Okay, I've been willingly gluten-free for 10 years. Last month, I mistakenly ate some crackers at a party that were not gluten-free (thinking they were), and I did not get sick like I normally do! In the past, all it has taken is a very small amount. I have discussed this recently with a few people, and one said "well, maybe you are 'over it'." which kind of pissed me off, but, I got to wondering...as we all do, wouldn't it be nice if I actually were over it? But, I KNOW it doesn't work that way!!! And still, I kept wondering why I didn't get a rash, or become ill...at all. So...I did something brave to test it out. When I brought some artisan bread home for my DH two nights ago, I had a piece, and waited for the belly-cramping-wish-I-were-dead-gastro-intestinal distress I would get with even the smallest amount, and it never happened!!!! I was so surprised, I have been greedily consuming my top 5 things I have missed for the past 10 years, hoping I will get all 10 on my list in before I get a reaction and have to stop again. Two days, and still...NOTHING! I would like to know, has anyone ever experienced not becoming ill after eating gluten? I would feel better if I had never had a dh rash, but I discovered this was Celiac when a friend's mom who is a Celiac told me what the rash was when I mentioned to her back in the early 00's that "I have this rash, I think I am allergic to bread or something because it went away when I did the Atkin's diet, and came back when I went off of it." Thing is, if I hadn't had the rash, I would be telling myself, okay, well maybe I just had IBS all those years, and its finally healed for not eating gluten for 10 years. I would welcome any thoughts or discussions, this is blowing my mind! For the record, I had Upper/Lower GI series performed prior to GERD dx in 2007. GI did biopsy while "in there" without asking me (I went in for other issues) and when I woke up he told me I tested negative. I said "duh, why would I, I have not been eating it for over three years!" One more thing, I learned all I needed to know on this site, and haven't posted until now, because I've not had reason to, until now. This is a BIG reason to!
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Gluten-free after trying unsuccessfully and falling off wagon and becoming so sick--this is when the docs found the Hashimoto's, 2003. I have not eaten gluten willingly since then, until January, 2013. Past GI symptoms, delayed DH rash, biopsies on both have been negative, as well as IgE (all tests performed while not willingly consuming gluten). GERD dx in 2007, citric acid is worst offender. Mushrooms (the regular kind, that is) cause GI symptoms along with occasional rash (different than DH, the red dot kind) and I now wonder how many times I got sick from mushrooms and thought it was gluten contamination.

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#2 KaleidoscopeDream

 
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Posted 15 January 2013 - 11:47 AM

I'm quite new to this, but I think it's pretty obvious what's going on. Your 10 years gluten free healed your body. From what I understand, gluten has a cumulative effect, so it's only a matter of time before your antibodies are out of control again if you continue to gluten yourself. I don't mean to be offensive. It's just that I've suffered with DH for a long time now and only recently discovered what it was, and I would give anything to be in the position you were in before you started glutening again. I do miss the foods I used to eat, but it's not worth it to me to even think about them if I know they'll harm me. DH is my own personal hell, and I can't for the life of me fathom why anyone would risk allowing it to return.
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#3 kareng

 
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Posted 15 January 2013 - 12:00 PM

10 years ago - Did you have that rash biopsied? Or have the blood tests for Celiac?
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#4 saaa-wheat<3

 
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Posted 15 January 2013 - 01:01 PM

10 years ago - Did you have that rash biopsied? Or have the blood tests for Celiac?


Yes, to both(and its listed in my signature. As for the dh, it was a couple of days after it had broken out. From what I understand, it needs to be biopsied within a certain time-frame? Anyway, dermatologist was so interested in my case, she sent me a letter stating she wanted to explore further if it happened again. That was three years ago, and it hasn't. As for the Celiac, I had been gluten-free for three plus years when I had upper and lower GI performed, so made sense he didn't find anything...he tested three spots.

KalidiescopeDream, from all I've read over the 10+ years is that once a person has it, a person has it. I have experiences ALL the symptoms, from severe intestinal distress, to the skin rash, to migraines, to brain fog...and have yet to experience ANY...I won't even begin to tell you what I have eaten willingly in the past two days, lets just say, I am surprised that I am not in a gluten-coma or living in the bathroom.

I do have to say, I feel I have been having issues with my levothyroxine...I've been on it for 10 years for my thyroid and feel that my body is sensitive to it...I have been having dizziness and tingling sensations that all disappeared when I stopped taking it completely a couple of months ago. Waiting for recent labs to see if I truly need to be on it, because I feel TONS better for not taking it, and hoping if my NP feels I need something, I can try the naturo-path route to support my thyroid rather than mess with hormones.
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Gluten-free after trying unsuccessfully and falling off wagon and becoming so sick--this is when the docs found the Hashimoto's, 2003. I have not eaten gluten willingly since then, until January, 2013. Past GI symptoms, delayed DH rash, biopsies on both have been negative, as well as IgE (all tests performed while not willingly consuming gluten). GERD dx in 2007, citric acid is worst offender. Mushrooms (the regular kind, that is) cause GI symptoms along with occasional rash (different than DH, the red dot kind) and I now wonder how many times I got sick from mushrooms and thought it was gluten contamination.

#5 saaa-wheat<3

 
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Posted 15 January 2013 - 01:08 PM

I'm quite new to this, but I think it's pretty obvious what's going on. Your 10 years gluten free healed your body. From what I understand, gluten has a cumulative effect, so it's only a matter of time before your antibodies are out of control again if you continue to gluten yourself. I don't mean to be offensive. It's just that I've suffered with DH for a long time now and only recently discovered what it was, and I would give anything to be in the position you were in before you started glutening again. I do miss the foods I used to eat, but it's not worth it to me to even think about them if I know they'll harm me. DH is my own personal hell, and I can't for the life of me fathom why anyone would risk allowing it to return.


Oh, and I want to support you, K, since you've just begun, I am certain the more you avoid gluten, the more your rash will ease up. Itchier than a b---h, andits all you can think about when you aren't ripping your skin raw from scratching, I do understand that. My main reason for stopping was because of the rash...then, once I had stopped for a good period of time, my tummy got sensitive (or, I had been de-sensitized my entire life for eating it?) and I started to get the intestinal stuff if I was unintentionally exposed, so I feel your pain, or itch as it were, in this case.
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Gluten-free after trying unsuccessfully and falling off wagon and becoming so sick--this is when the docs found the Hashimoto's, 2003. I have not eaten gluten willingly since then, until January, 2013. Past GI symptoms, delayed DH rash, biopsies on both have been negative, as well as IgE (all tests performed while not willingly consuming gluten). GERD dx in 2007, citric acid is worst offender. Mushrooms (the regular kind, that is) cause GI symptoms along with occasional rash (different than DH, the red dot kind) and I now wonder how many times I got sick from mushrooms and thought it was gluten contamination.

#6 kareng

 
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Posted 15 January 2013 - 01:08 PM

Yes, to both(and its listed in my signature. As for the dh, it was a couple of days after it had broken out. From what I understand, it needs to be biopsied within a certain time-frame? Anyway, dermatologist was so interested in my case, she sent me a letter stating she wanted to explore further if it happened again. That was three years ago, and it hasn't. As for the Celiac, I had been gluten-free for three plus years when I had upper and lower GI performed, so made sense he didn't find anything...he tested three spots.

KalidiescopeDream, from all I've read over the 10+ years is that once a person has it, a person has it. I have experiences ALL the symptoms, from severe intestinal distress, to the skin rash, to migraines, to brain fog...and have yet to experience ANY...I won't even begin to tell you what I have eaten willingly in the past two days, lets just say, I am surprised that I am not in a gluten-coma or living in the bathroom.

I do have to say, I feel I have been having issues with my levothyroxine...I've been on it for 10 years for my thyroid and feel that my body is sensitive to it...I have been having dizziness and tingling sensations that all disappeared when I stopped taking it completely a couple of months ago. Waiting for recent labs to see if I truly need to be on it, because I feel TONS better for not taking it, and hoping if my NP feels I need something, I can try the naturo-path route to support my thyroid rather than mess with hormones.


I wasn't asking if you were tested for Hashi's (that is in your signature). I was wondering if, before going gluten free you were tested for Celiac with a blood test or a biopsy or if they had biopsied the rash for DH. Look slike they biopsied but you think they may have done it wrong. What I'm wondering is if you really have Celiac. Maybe you don't and do not have to eat gluten-free.

If you actually have Celiac, then eating gluten, even if you don't immediately fell the damage, is harmful.

http://www.curecelia...guide/treatment
"A lifetime commitment

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve."
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#7 saaa-wheat<3

 
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Posted 15 January 2013 - 01:25 PM

I wasn't asking if you were tested for Hashi's (that is in your signature). I was wondering if, before going gluten free you were tested for Celiac with a blood test or a biopsy or if they had biopsied the rash for DH. Look slike they biopsied but you think they may have done it wrong. What I'm wondering is if you really have Celiac. Maybe you don't and do not have to eat gluten-free.

If you actually have Celiac, then eating gluten, even if you don't immediately fell the damage, is harmful.

http://www.curecelia...guide/treatment
"A lifetime commitment

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve."


No, I wasn't tested for anything before I went gluten-free...I was miserable with the dh rash as mentioned, so I tried, felt better (but still made mistakes because of all the hidden stuff so not totally better) then I had a stressful situation dealing with a very ill parent and that is when I went off the wagon. I became so very ill and that is when they discovered my Hashi's, and read here that since its auto-immune that the two are related, so went back on gluten-free diet strictly this time and symptoms improved, but I still reacted if I got "glutened". These are when the tests occurred, aside from the biopsy (I just added, sorry) in my signature, and mentioned at the beginning of this thread...and of course, I would test negative because I had been faithful to my gluten-free diet for over three years...and negative to immediate response (IgA? IgE? IgG? can't remember, at work, no time to look up, always get the three confused), and at this point, I had wasted enough money to know that when I ate gluten it affected me, so I made a lifestyle change to see if I would feel better and I did. I'm frustrated, because I've finally "trained" all my friends and family not to even cross-contaminate, I was so sensitive, and now I can eat full on and not be ill and no rash? I do know my reaction is delayed, that much is certain (have letter from allergist stating what "while no immediate response was present, its quite possible that I have delayed, GI consult recommended if you see fit" in a note to my primary. *confused*
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Gluten-free after trying unsuccessfully and falling off wagon and becoming so sick--this is when the docs found the Hashimoto's, 2003. I have not eaten gluten willingly since then, until January, 2013. Past GI symptoms, delayed DH rash, biopsies on both have been negative, as well as IgE (all tests performed while not willingly consuming gluten). GERD dx in 2007, citric acid is worst offender. Mushrooms (the regular kind, that is) cause GI symptoms along with occasional rash (different than DH, the red dot kind) and I now wonder how many times I got sick from mushrooms and thought it was gluten contamination.

#8 saaa-wheat<3

 
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Posted 15 January 2013 - 02:07 PM

I guess the reason why I am so confused is, that I used to get really ill from just a very little amount, and now I can eat full on with no symptoms...I mean, I used to get really, really ill. When I had the crackers last month, I was tossing and turning all night waiting for a reaction and didn't get one, as that was the first time I had put something in my mouth, chewed, and swallowed then discovered later that it was gluten, as opposed to just suffering from sypmtoms as a result of going to my in-laws or out to dinner and never really knowing exactly where the gluten came from...I do see that people have said that they don't get a reaction, but that has never been the case with me. Since I have never had a confirmed diagnosis, do I keep eating it until I get ill, knowing it has done so in the past? Should I avoid it? All I know, is that I don't want to feel like have, but its so easy to keep eating all the food I've been missing for 10 years when I don't have an immediate response. I understand, from reading, that it could take months for my gut to become affected enough for the GI to biopsy with results, which is why I decided to not go through with the tests, I always became ill if I ate gluten, and did not want to continue to feel ill for months until they figured it out.
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Gluten-free after trying unsuccessfully and falling off wagon and becoming so sick--this is when the docs found the Hashimoto's, 2003. I have not eaten gluten willingly since then, until January, 2013. Past GI symptoms, delayed DH rash, biopsies on both have been negative, as well as IgE (all tests performed while not willingly consuming gluten). GERD dx in 2007, citric acid is worst offender. Mushrooms (the regular kind, that is) cause GI symptoms along with occasional rash (different than DH, the red dot kind) and I now wonder how many times I got sick from mushrooms and thought it was gluten contamination.

#9 Pegleg84

 
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Posted 15 January 2013 - 02:09 PM

10 years gluten free is a long time. When was the last time you had a reaction to a glutening? Maybe your gut really has healed enough that now that you're feeding it gluten again, the damage isn't yet enough to affect you. Problem is you won't know until the symptoms do hit and by then you'll need weeks or months to recover, depending.
However (as the GI I saw on friday suggested, and I told him it'd never happen), you could take this as an opportunity to do a gluten challenge and get a proper biopsy done. If you can get one done within a month, and you're still "feeling" ok about eating gluten, then it might be worth it to find out for sure.
At the same time, even if you feel ok now, there's no telling when the symptoms will hit you and you'll have to start from scratch.
If you care about your future health, I'd lay off the gluten to be safe.
if you're willing to risk it, and potentially suffer through the healing period, call your doctor and get a biopsy so you'll be sure.

In the meantime, if you're going to eat that crusty bread, have some for me.
Hope you keep feeling better and it doesn't bite you back!
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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#10 saaa-wheat<3

 
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Posted 15 January 2013 - 02:21 PM

10 years gluten free is a long time. When was the last time you had a reaction to a glutening? Maybe your gut really has healed enough that now that you're feeding it gluten again, the damage isn't yet enough to affect you. Problem is you won't know until the symptoms do hit and by then you'll need weeks or months to recover, depending.
However (as the GI I saw on friday suggested, and I told him it'd never happen), you could take this as an opportunity to do a gluten challenge and get a proper biopsy done. If you can get one done within a month, and you're still "feeling" ok about eating gluten, then it might be worth it to find out for sure.
At the same time, even if you feel ok now, there's no telling when the symptoms will hit you and you'll have to start from scratch.
If you care about your future health, I'd lay off the gluten to be safe.
if you're willing to risk it, and potentially suffer through the healing period, call your doctor and get a biopsy so you'll be sure.

In the meantime, if you're going to eat that crusty bread, have some for me.
Hope you keep feeling better and it doesn't bite you back!


Thanks Pegleg! I've been thinking on the challenge/biopsy thing..which is another reason why I am shouting out. It has been months since I've been felt like I've been bitten...and maybe more, as I have just recently discovered mushrooms now give me the same distress and I might have been confusing the two. Concerned the doc won't find anything even if I do a challenge, from what I've read, some have gotten fairly ill and have had to have several biopsies to finally arrive at the one that confirms diagnosis. I am thinking, it might be worth it to eat and be happy again until try for the biopsy when I know I have been eating gluten. I was so hoping that the dermatologist biopsy of my rash would have confirmed without my having to go the GI route, she even says it LOOKED like a dh rash, yet the biopsy came back negative. In a way, I am wishing that all the symptoms weren't Celiac, but what else could they have been? I certainly am enjoying eating all my favorite foods, but if I start to feel like I used too...then so not worth it. But...maybe worth it in the long run for confirmed diagnosis? With each test, I've been waiting to take that piece of paper and attach it to a stick and wave it in front of all for them to see...those of you who are surrounded by skeptics, know what I'm talking about. One thing I have going for me, is that my DH has seen how sick I've gotten in the past and I have his total support.

Edited by saaa-wheat<3, 16 January 2013 - 01:52 PM.

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Gluten-free after trying unsuccessfully and falling off wagon and becoming so sick--this is when the docs found the Hashimoto's, 2003. I have not eaten gluten willingly since then, until January, 2013. Past GI symptoms, delayed DH rash, biopsies on both have been negative, as well as IgE (all tests performed while not willingly consuming gluten). GERD dx in 2007, citric acid is worst offender. Mushrooms (the regular kind, that is) cause GI symptoms along with occasional rash (different than DH, the red dot kind) and I now wonder how many times I got sick from mushrooms and thought it was gluten contamination.

#11 mushroom

 
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Posted 15 January 2013 - 03:07 PM

Since your dermatologist said it looked like a DH rash, I am making the assumption that she is celiac savvy and knew how to properly biopsy for DH; i.e., clear skin immediately adjacent to the rash, rather than the rash itself?
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#12 saaa-wheat<3

 
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Posted 16 January 2013 - 01:57 PM

Since your dermatologist said it looked like a DH rash, I am making the assumption that she is celiac savvy and knew how to properly biopsy for DH; i.e., clear skin immediately adjacent to the rash, rather than the rash itself?

Yes, she must, as I questioned her when she drew with marker on my foot where she was to take the biopsy as to why she was taking from the side of it. I'm thinking I might have went past the time where it would have shown on a test? I think I remember reading that the blisters must have just formed or something, and if they have popped and healed it's too late? I think most of them were at that point, but I still had a couple that she thought might test. She also was the one who suggested that I could have McCann's Irish oatmeal, and it was one of the first things she said to me when I met her :)
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Gluten-free after trying unsuccessfully and falling off wagon and becoming so sick--this is when the docs found the Hashimoto's, 2003. I have not eaten gluten willingly since then, until January, 2013. Past GI symptoms, delayed DH rash, biopsies on both have been negative, as well as IgE (all tests performed while not willingly consuming gluten). GERD dx in 2007, citric acid is worst offender. Mushrooms (the regular kind, that is) cause GI symptoms along with occasional rash (different than DH, the red dot kind) and I now wonder how many times I got sick from mushrooms and thought it was gluten contamination.

#13 mushroom

 
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Posted 16 January 2013 - 02:03 PM

I'm thinking I might have went past the time where it would have shown on a test? I think I remember reading that the blisters must have just formed or something, and if they have popped and healed it's too late? I


Yes, they do say to take it from clear skin immediately adjacent to an active lesion.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#14 saaa-wheat<3

 
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Posted 16 January 2013 - 02:35 PM

Yes, they do suay to take it from clear skin immediately adjacent to an active lesion.

Thought so, thanks. She sent me a letter after saying she wanted to continue to work with me, but I've only had one small outbreak since then, and it was over the weekend, so I never called her back, as by Monday I would have been in the same boat as I was last time. Hoping with my gluten-challenge, I will get enough of a rash will be able to have that biopsied...its much more less invasive...and less expensive.
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Gluten-free after trying unsuccessfully and falling off wagon and becoming so sick--this is when the docs found the Hashimoto's, 2003. I have not eaten gluten willingly since then, until January, 2013. Past GI symptoms, delayed DH rash, biopsies on both have been negative, as well as IgE (all tests performed while not willingly consuming gluten). GERD dx in 2007, citric acid is worst offender. Mushrooms (the regular kind, that is) cause GI symptoms along with occasional rash (different than DH, the red dot kind) and I now wonder how many times I got sick from mushrooms and thought it was gluten contamination.

#15 New Community Member

 
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Posted 17 January 2013 - 09:37 AM

That is amazing!! Praise God!! To react to gluten in such a way then suddenly not react at all, sounds nothing short of a miracle to me. Don't question it! Thanks for your encouraging post!



Okay, I've been willingly gluten-free for 10 years. Last month, I mistakenly ate some crackers at a party that were not gluten-free (thinking they were), and I did not get sick like I normally do! In the past, all it has taken is a very small amount. I have discussed this recently with a few people, and one said "well, maybe you are 'over it'." which kind of pissed me off, but, I got to wondering...as we all do, wouldn't it be nice if I actually were over it? But, I KNOW it doesn't work that way!!! And still, I kept wondering why I didn't get a rash, or become ill...at all. So...I did something brave to test it out. When I brought some artisan bread home for my DH two nights ago, I had a piece, and waited for the belly-cramping-wish-I-were-dead-gastro-intestinal distress I would get with even the smallest amount, and it never happened!!!! I was so surprised, I have been greedily consuming my top 5 things I have missed for the past 10 years, hoping I will get all 10 on my list in before I get a reaction and have to stop again. Two days, and still...NOTHING! I would like to know, has anyone ever experienced not becoming ill after eating gluten? I would feel better if I had never had a dh rash, but I discovered this was Celiac when a friend's mom who is a Celiac told me what the rash was when I mentioned to her back in the early 00's that "I have this rash, I think I am allergic to bread or something because it went away when I did the Atkin's diet, and came back when I went off of it." Thing is, if I hadn't had the rash, I would be telling myself, okay, well maybe I just had IBS all those years, and its finally healed for not eating gluten for 10 years. I would welcome any thoughts or discussions, this is blowing my mind! For the record, I had Upper/Lower GI series performed prior to GERD dx in 2007. GI did biopsy while "in there" without asking me (I went in for other issues) and when I woke up he told me I tested negative. I said "duh, why would I, I have not been eating it for over three years!" One more thing, I learned all I needed to know on this site, and haven't posted until now, because I've not had reason to, until now. This is a BIG reason to!


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